A story of healing
Our daughter Kaya is a happy and cheerful toddler who loves music, dancing, singing, books and legos. She can run, climb, and recently she’s been practicing how to jump! She can express herself using sign language and her many facial expressions are simply adorable. She’s her Achi Tala’s favorite and they snuggle close often when they sleep.
Perhaps it’s because she was born with a special condition. Or perhaps because she’s the youngest in the family. Or maybe both. But one thing is for sure, everyone in our family and circle of friends loves her so much!
My pregnancy with Kaya was a challenge to begin with. She wasn’t gaining weight inside my womb as she should and we even had premature labor. We prayed hard for her to grow more each day, and for her to reach term. And we were so happy when she did! She’s a true little warrior right from the start.
When she was born, we learned that Kaya has Down Syndrome and Congenital Heart Disease. There were three holes in her heart. The two closed spontaneously early on. The third one, a ventricular septal defect (VSD), remained opened and so we regularly did 2D-echo to monitor it.
To be honest, I was devastated at first. Like many parents of children with special needs, I asked “Why my child, Lord? What did I do?” I was thinking that maybe I have done something wrong…
God answered me in 2 ways.
First was through John 9:3,
"It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him.” John 9:3
I knew then that Kaya will be teaching me many lessons as a believer and as a mother.
The second way was through the song Trust His Heart by Babbie Mason that my OB and dear friend, Ghea, shared with me during my preterm labor. The chorus goes,
🎶 “God is too wise to be mistaken. God is too good to be unkind. So when you don't understand, when don't see His plan, when you can't trace His hand, trust His heart.”
So although we knew that the possibility of a heart surgery will always be there, Jerome and I trusted God. With hope, we prayed to God for her VSD to close by itself like the other two holes.
But God had other plans.
THE DAY WE FOUND OUT THAT KAYA NEEDS A HEART PROCEDURE
May 10 was a Monday. We went to our scheduled 2D-echo and our pediatric cardiologist, Dr. Josephine dela Cerna, noted that her VSD has enlarged. She conferred with her colleagues both here in CDO and in Manila, and the plan was to do cardiac catheterization in PGH. The best case scenario was a device closure, but we still had to prepare for open heart surgery, just in case the device closure won’t work.
A few days later a date was set. The procedure will be on May 24. Deep breaths.
We had 9 days to prepare ourselves and our resources. So many things to do and so much money to raise in so little time. I was so overwhelmed. I cried every day but I was also thanking God every moment for the many blessings He revealed to us day by day.
My sister-in-law, Tong, offered to take care of Tala. And though it was our first time to be away from Tala, so I was really having sepanx issues, Jerome and I thought that having her stay with Tong is the best option. This will allow us to focus on Kaya’s procedures and Tala can continue her daily routine in a familiar place. We thought that being able to visit Angkong, Ama, Twa Koh and Achi Micah will be good for her—because for sure, so much love and attention will continue to surround her even if Daddy and Mommy are away.
My dear friend, Honey, was virtually holding my hand every step of the way. Her 3-year-old daughter Hannah underwent a successful heart operation last year, so she knows exactly what I was going through. Their family story has always been an inspiration to me. She reminded me of Psalm 91 and shared with me the beautiful song “You Already Know” by JJ Heller. I played that song every day, and it helped me stay positive.
People from our church, specially our bible study mates, were consistently praying for us, checking on us, and offering words of comfort and encouragement. Relatives and friends from everywhere, even those who were abroad, reached out and offered help and prayers.
Our kind doctors here readily answered our questions and helped us through the entire process of securing medical requirements for travel. Dr. Dela Cerna coordinated with PGH and our pedia-cardio who will receive us there, Dr. Louisa Go, was very accommodating and readily gave advice with regards to our preparations and admission procedure.
The moment the date for Kaya’s procedure was set, I found myself praying and asking God why this should happen at this time when we are financially drained. Our movement studio closed last year. Our online business is still struggling. My clinical practice has been on hold since the pandemic because I had to take care of our little girls.
His answer was clear—this is happening right now so that Jerome and I will know that He is the God who provides, and He will be the one to supply for our needs. Not by our own effort, but by His grace and power.
We were reminded of this verse from Philippians 4:19:
And my God will meet all your needs according to the riches of his glory in Christ Jesus. Philippians 4:19
Jerome and I prayed hard for wisdom and provision, because, honestly we barely had money to buy plane tickets at that time, let alone pay for an open heart surgery in Manila.
A handful of people, even our doctors here, who are also my good friends and Kaya’s Ninang Jot and Ninang Jessa, asked us if they could post on social media groups to help us raise funds. We asked God to bless our decision if it was His will for us to post on Facebook about Kaya’s condition, cardiac catheterization and possible surgery.
Amazingly, within 48hrs we had the minimum amount needed to tell our doctors that yes, we can fly to Manila for Kaya’s procedure. Friends offered their cars for us to use, and upon our arrival, my medschool housemate Titay picked us up from the airport. My medschool groupmate, Lyn, even had a carseat ready for Kaya! Another set of friends offered their condos for us to stay in, though thankfully Jerome and I were allowed to stay in the hospital together.
Our doctors asked us to prepare 10 bags of blood, preferably same as Kaya’s blood type which was AB+. We had around 6 friends here in CDO who are willing to donate, and a couple of friends in Manila. But transporting blood from CDO to Manila is apparently not that easy. We posted on Facebook again and sent messages to friends for help. The following day, I received a message from a college friend, Katcee, who saw my post saying that her godfather who is the Red Cross Chairman will help us get the blood for Kaya.
Honey introduced me to Mommy Janice of Jaden and Friends. What an amazing woman she is! Being a mom of a child who also underwent heart surgery before, Mommy Janice formed this support group for families nationwide who have children with heart disease and helps them prepare for operation financially and emotionally. I learned so much from our daily messages in that group chat. Every time a parent would post about the successful procedure of his/her child, and that child is recovering well, eating already and even dancing, my fears would subside and hope gets a better hold of me.
Such blessings that we could only say at that time, “Thank You, Lord, for giving us everything we need.”
PEACE BEYOND HUMAN UNDERSTANDING
But there was a specific need inside my soul that was much harder and took longer to address. I guess every parent who faced this daunting scenario felt the same way. I WAS AFRAID. I was so fearful of so many things that I honestly felt paralyzed, and many times during that period of waiting and preparing for Kaya’s procedure I had to shake my head to wake my foggy brain up. I kept reminding myself that I have to get moving, because while Jerome took care of our travel requirements and “logistics” and raising funds, I had to pack for our trip, bring Kaya’s medical records, find blood donors, prepare Tala’s clothes and activities for when we leave her with my sister-in-law, and communicate with our doctors.
A week before we flew to Manila, I spoke with our Pastor’s wife. She asked about my specific fears and told me to surrender those fears to God. She lovingly reminded me that our children are the Lord’s and they are here with us only because He let us borrow them. More importantly, she reminded me that God already has the solution to all our problems and the best thing to do now is to entrust our children to God and focus on my relationship with Jerome as we go through this ordeal together.
With raw honesty and as painful as it was to admit, I told God that I am most afraid of these 3 things. One, that we will lose Kaya. Two, that we will catch COVID as we travel. And three, that something might happen to us or to Tala while we’re apart.
The story of Abraham and Isaac came to my mind. Maybe because our situation makes the concept of sacrifice so tangible… But I remembered too that Abraham trusted the Lord and obeyed. And in His perfect time, the Lord saved Isaac’s life. So in my prayer journal, I wrote:
“Dear Lord, I confess my still fearful heart. I fear losing my family to illness or accident. I fear for Kaya’s operation knowing that in every major surgery there is always the risk of morbidity. I fear leaving Tala behind—na kung magkasakit siya, wala kami. O baka kung kami ang magkasakit, di kami makabalik sa kanya. I fear for Jerome’s health na baka sya magka-COVID doon sa Manila because he will be the one doing the legwork and errands as I take care of Kaya.
“But dear Lord Jesus, I know You love us. I know that You are our Savior and your lovingkindness abounds. I believe that You have plans for our lives and that you already have the solution, You are already in our future. Please bless me and Jerome with Your peace. Please heal Kaya. Help us decide according to Your will. Please give Jerome clarity of mind and a steadfast heart as he decides what’s best for our family. Draw Jerome close to You and envelop him in your love and protection.
“As for the next few days, Lord Jesus, please fill our home with love, joy, peace, kindness, patience, goodness, faithfulness and self-control. And forgiveness. Help us fill Tala’s love tank. Please let these next few days be the best yet for our family. I surrender to You. Your will be done.”
A sense of calm came over me—enough for me to function and do the things I had to do. A large part of it was preparing my girls for what’s to happen. For Tala, it was more of mental and emotional preparation—that she will be with her Be Koh while we’re gone, that she still has a routine to follow, that she is responsible for her things and more importantly, that she can pray when she misses us or if she’s upset. For Kaya, it was more practical—mainly that she has to learn to wear a face mask and a face shield and get used to people wearing them too.
The day before we left for Manila, my best friend, En-en, dropped by our house for a much needed pep talk. I hated COVID even more that day because we had to speak over the bakod under the mid-afternoon sun with our masks on and we had to make do with squeezing each other’s hands instead of hugging as tightly and as long as we wanted.
But seeing her that day reminded me to be grateful of the love, kindness and support we are receiving from relatives and friends all over the world. Thank God for Facebook and Viber, we are able to communicate despite the distance. Knowing that so many loving people are praying for Kaya gave us strength and encouragement.
Though deep in my heart I still had raging emotions and deep in my head I still had racing thoughts and questions, God’s promise of peace became my anchor.
Over and over again, I recited this favorite bible verse from Philippians 4:6-7:
Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7
GOD PROTECTS HIS CHILDREN
On the way to the airport on May 23, I did my best to control my emotions because I did not want Tala to see me crying. She was as cheerful as always, and even told Kaya, “Shobe, don’t be scared, okay?”
We hugged Tala goodbye—and you know, she did not whine, didn’t even cry (but I did!). Seeing my 4-year old being so brave like that encouraged me to look beyond my fears and focus at the task at hand.
We took the morning flight to Manila. It was Kaya’s first plane ride and she was actually quite happy looking at everything around her. It was a challenge to make her wear her face mask and face shield, but eventually she agreed to it.
Arriving in Manila, getting admitted in PGH, settling in our room—surprisingly, all these were a breeze. And though we had to do pre-operative procedures like chest x-ray, a repeat 2d-echo, IV insertion and blood extraction all afternoon making Kaya tired and cranky, everyone was simply so eager to help. Dr. Cathy, the pedia-cardio fellow who accompanied us even offered to carry my bag because I was carrying Kaya all the time while Jerome took care of the paperworks and bought food.
Being in PGH, in such a big hospital, a COVID referral center at that, I kept thinking and asking… “Lord why now during pandemic? Lord, di nga po kami umaalis ng bahay since March last year! Why now…?”
His answer came from a verse that my medschool classmate, Aga, sent me. Isaiah 43 says:
Do not be afraid, for I have ransomed you. I have called you by name; you are mine. When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the Lord, your God… your Savior.
So why now? It was because God wanted to show me how He guards us and keeps us safe, how He covers us under His protection as long as we abide in Him. And so, armed with prayers, face-masks, face-shields, alcohol and other pandemic must-haves, Jerome, Kaya and I went through what we needed to do in Manila.
And true to His word, God indeed protected us. As of the time of this writing, we have completed our post-travel self-imposed quarantine, and so far no symptoms. Praise God!
GOD KEEPS HIS PROMISES
Then THE big day came.
May 24, Monday, Kaya was placed on NPO at 6 AM in preparation for our procedure. She kept signing “food” and “milk”, and I kept on signing back “later”. Thank God for books, pen and paper, and Cocomelon, we got through the morning of waiting with manageable protests from our little warrior.
At noon, we were brought to the Cardiac Cath Lab waiting area. We had to wait longer than expected since the case before Kaya was complicated. But it was okay because Kaya was just napping and it gave Jerome and me some quiet time.
Then Dr. Dexter Cheng and Dr. Louisa Go, our attending pediatric cardiologists, approached and said it was time for Kaya to go inside. I honestly don’t remember much of what they said to Jerome and me at that time and how I brought Kaya inside where I had to sing to her as she was being sedated. But I do remember praying for our doctors and surrendering everything to God. “Lord, bless our doctors, Your will be done, Ikaw na po bahala.”
Honey told me about this—that waiting is one of the hardest things to do. So true! It became much harder when Jerome was sent on an errand for Kaya’s blood sample and I had to wait by myself. I listened to a playlist I made on Spotify named “Kaya’s Heart”. It had only 5 songs initially, but these are my most favorite worship songs that have been comforting me from Day 1.
Singing in the hallway (quietly, of course) helped me focus on Jesus instead of my fears. Then I remembered the song WAYMAKER, which is Jerome’s favorite “hele” song for Kaya. So I added it to my playlist.
Halfway through the song, Dr. Cheng came out. I stopped singing and stood up to meet him. And would you believe, he told me that Kaya’s heart is well already!
I vaguely remember saying something like, “Po? What do you mean, Doc?”
They did the cardiac catheterization and hemodynamic studies and saw that the VSD has closed! No need for device closure and no need for open heart surgery!
Syempre iyak na naman ako! “Thank you, Doc, thank you!”
He gave me a pat and said, “Tell your husband.”
After just a few minutes, Dr. Louisa came out next and said something like, “Nakausap mo na si Dr. Cheng, Mommy?” I said yes. And she happily exclaimed, “Best news ever!” Oh, I couldn’t agree more!
If it wasn’t for the pandemic, I would have hugged our doctors! I was (and still am) so happy and grateful for God’s miracle of healing Kaya’s heart! Just. Like. That.
I felt the pressure and stress of the past few weeks fade away. Nakuha ko pang mag-request magpa-picture with our doctors, “Doc, pwede po pa-picture? This will be for Kaya, I want to tell her sino mga doctors nya. Promise po, I won’t post on social media.” And they gamely posed for a groufie!
Imagine my tears of joy while praying, “Thank You, Lord, thank you! Ikaw talaga Lord, may theme song pa tayo!” Way-maker, miracle-worker, promise-keeper, light in the darkness, my God, that is who you are! That is who you are!”
I called Jerome to tell him the amazing news. He was as ecstatic as I am, though expectedly less dramatically so. Haha. Ako talaga ang ma-drama. He hurried back. We prayed together and thanked God for His miracle in our lives.
In retrospect, we both agreed that through this whole ordeal, ang pinaka-mahirap yata “physically” is the next 6 hours after Kaya’s cardiac catheterization because we had to make sure she won’t move her right leg or flex her hip to prevent bleeding and hematoma on the insertion site. When Kaya was fully awake, she ate her favorite strawberry yogurt… na may papikit-pikit pa sa sarap! What a blessing!
Dr. Dela Cerna, our cardio in CDO, then called. Our doctors here updated her already and she was also amazed at what happened. Jot-jot said to me, “Te, ang lakas mo talaga kay Lord!” I cried and laughed as I shared to her what happened.
But I have a confession to make, the doctor-teacher-student part of me was asking—HOW? How did it happen? What’s the physiologic explanation? But I didn’t have the capacity at that time (or now, haha) to “study” so I just chose to thank Jesus and praise Him! Only HE can close a big VSD!
This verse came to mind, Jeremiah 33:3 :
Call to me and I will answer you, and will tell you great and hidden things that you have not known. Jeremiah 33:3
GOD IS FAITHFUL EVEN WHEN WE FAIL AND FALL
The following day after the procedure, our doctors said we’re good to go. But since we’re still in the hospital and it has been more than a year since Kaya’s last eye check-up, we requested to be referred to a pediatric ophthalmologist. My med school group mate, Pam, wasn’t in PGH at that time so she referred us to Dr. James Abraham Lee, who was so cheerful and entertained our many questions about Kaya’s vision. And we were given another blessing when Doc James said that Kaya’s eye grade has decreased to half.
Jerome processed our bills and discharge papers and in a day we were out of the hospital. It was now time to go home.
But I have another confession. So soon after Kaya’s healing, I felt fear gripping me again. I was afraid that we might have contracted the COVID virus during this trip. This made me think of the people who were with Moses when God parted the sea—they witnessed a miracle but they still began to worry and grumble.
It made me realize that worry and fear will always be part of our human experience. But what we do with the worries and fears is what matters.
I asked The Lord to forgive me for being scared again and for the Holy Spirit to fill me with peace and joy as I focus on the blessings we’ve received.
I repeated John 16:33 to myself, where Jesus said:
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33
How comforting it is to know that when we are afraid, when we have challenges and problems, when we fail to remember how powerful God is because we are frustrated or angry, whatever negative thoughts we have because we are desperate or hopeless, our Lord is a just a prayer away. And He faithfully hears us.
HOME AT LAST
We had a smooth and easy trip back to CDO. It was so wonderful to hug Tala again and to be back home!
Now that our ordeal is over, things are starting to make sense. The Lord wanted to show us many blessings, not just one miracle, so He made us wait.
God did not close the hole in Kaya’s heart 2 years ago because He wanted us to learn to trust Him. God allowed this to happen during our financial crisis so that we will realize that provisions come from Him. He brought us to Manila during this pandemic to show us that He is in control and that we are under His protection.
In James 1:2-4, it is written:
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2-4
God works even when we don’t feel it or see it right away. He has great plans for our lives even if our human minds can not understand our current desperate situation. Our daughter’s heart was His to begin with, this I understand now. He was healing Kaya’s heart through our moments of waiting, of character-building, of faith-testing. As a result, He not only closed the hole in Kaya’s heart, but made my mama-heart stronger as well.
Jerome and I know that we will still face many trials in our lifetime, specially as parents raising two spirited little girls. But this miracle of healing will always be a reminder that we have a faithful God who loves us so much, who truly cares even about the small details of our days, and truly helps us overcome trials and difficulties.
We pray that everyone who will hear our story will open their hearts to God and allow Him to show the transforming power of His love in their lives too.
All glory and praise to God! 👆🏼